Thinking Today

Illustration of a person's head in outline profile, with colored gears inside the head, representing thoughts

When I was first starting out in disability rights as a summer employee at an Independent Living Center in 1990, I read a monograph by someone in the Independent Living / Disability Rights field on whether or not IL philosophy really worked for people with intellectual disabilities. Ultimately, the answer in the piece was, “Yes, of course!”

However, the way it was written made it very clear that it was still very much an open question whether IL principles were applicable for people with intellectual disabilities. I think about that a lot when I see debates and flame wars between disability rights activists and some parents of disabled kids, as well as some professionals in the “developmental disability” field. The movement itself is pretty much settled on the idea that people with all kinds of disabilities have basic rights, that all should be assumed to have personal agency, and that everyone can and should be able to exercise meaningful choice in their lives, even if they need support to do so.

On the other hand, I think it’s important for those of us who believe this to revisit the question once in awhile, because lots of people still assume that mental and intellectual disabilities are completely different from physical disabilities. Many, many people … including some people with disabilities … really don’t see paraplegics, blind people, autistic people, and people with Down Syndrome as part of the same community at all. And it’s not just a personal hangup or fear of stigma. Some people really believe that applying the same fundamental rights and guiding principles to all of us doesn’t make sense. It's one of the reasons you see parents saying that an activist in a wheelchair can't have valid insights into the life and problems of a severely disabled, nonverbal, or "low functioning" person. That's wrong. It rightly shocks and offends us. But we should at least keep in touch with why people think that way, and not just condemn them out of hand.

Stuff That Worries Me

Photo of a man's head from behind, against a gray background, with a sketched cloud raining over his head
I’ve decided to start a new recurring feature called "Stuff That Worries Me."

Obviously, I wouldn't bother writing about things if I didn't want people to pay attention and maybe see things my way. That said, I hope readers will take these as just things I'm thinking about, not dire warnings or bitter, angry criticisms. You could call it "Concern Trolling," but my understanding is that true Concern Trolls use "self-criticism" dishonestly, to deliberately lead astray.

My worries may well be unwarranted, nitpicky, and annoying, but they'll at least be honest ... what I am actually thinking ... and from a disability rights perspective, not some other ideology in disguise.

Here’s the first one:

Whenever I talk to non-disabled people and try to describe the things that disability bloggers blog about, it all sounds a lot less important coming out of my mouth than when we blog amongst ourselves. This reminds me that most people still don't get why "disability issues" are important. People realize they are important to us, but not IMPORTANT. Most people don’t have any strong opinions about disability issues, and can’t really imagine them being interesting to anyone outside the disability community.

On the other hand, this feeling might also indicate that some of what we blog about is, in some sense, actually trivial. That's fine for some of the things we’re passionate about. But, I worry that if we can't prioritize issues within the disability community, how can we hope to focus everyone else's attention on what's really urgent?